Experiences in early stage Alzheimer's disease: Understanding the paradox of acceptance and denial

Abstract

A wealth of information about the biomedical aspects of Alzheimer's disease (AD), the most prevalent dementia among people over age 65, stands in counterpoint to the lack of systematic inquiry around the lived experiences of people with AD. Thirteen (four women, nine men) people, recently diagnosed with early stage AD, participated in this 6-month longitudinal study. This paper reports on AD participant's interviews which focussed on their experiences of AD symptoms, relationships with family and friends, and thoughts about the future. The transcribed interviews, analysed using methodological hermeneutics, revealed a constitutive theme of agency versus objectification and explained the paradox of why people with AD use both acceptance and denial when speaking about their experiences. Participants simultaneously acknowledged and resisted aspects of their disease in order to maintain agency in the face of cognitive losses. Acknowledgement was expressed through the themes involving acceptance of the disease and its symptoms, expression of feelings about the disease, and strategies to cope with the symptoms. Resistance was expressed in themes involving denial, minimization, normalization, and reminiscence about achievements and experiences of competence. Longitudinal analyses of the narratives indicated themes held across time. This research contributes to understanding how people live with early stage AD. Living with AD should not be described as either denial or acceptance, but rather as a paradox of understanding that includes both acknowledgement and resistance.

Acknowledgements

I express thanks to the AD participants and their families for their time and candor in making this research possible. The study, funded by a fellowship from the Alzheimer Society of British Columbia, was conducted by the author as part of her dissertation research at Simon Fraser University, British Columbia. The University of British Columbia's Clinic for Alzheimer's Disease and Related Disorders was critical as a source for participants and support for the research.

Notes

 Data collected from spouses will be reported in future publications on dyadic patterns of coping across time.

 Full unedited quotes are used in this section to illustrate the non-verbal aspects of these strategies and to fully portray the context of In the Moment strategies.